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  1. I tried I believe on my upper neck - a...

    I tried I believe on my upper neck - a retinaldehyde % that was mentioned in an old French study for type 1 (which I have). It caused redness and irritation badly enough that I didn't want to...
  2. I've been taking sweet wormwood for 1 wk and...

    I've been taking sweet wormwood for 1 wk and yeah, I do find it helpful. I notice immediate results from 1 pill which is nice. It feels like an antibiotic. Smoother skin, help with nose...
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    That's really interesting to me - my...

    That's really interesting to me - my understanding is the myositis antibodies are pretty specific (eg if you have them, you have dermatomyositis). (Mine were all negative.)

    I am on Cellcept now...
  4. I bought capsules - a random brand on amazon that...

    I bought capsules - a random brand on amazon that seemed to have reasonable reviews for people taking for malaria prevention etc.
    Honestly, I'm not sure how safe it is.
  5. I've tried taking sweet wormwood extract but not...

    I've tried taking sweet wormwood extract but not consistently. When I do, I notice an immediate relief in swelling / tightness of my face. For me it is more potent than plaquenil (which doesn't do...
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    I also notice a positive effect in my nose from...

    I also notice a positive effect in my nose from antibiotics.
    For me it took a while (3 wks after flagyl, 4 wks after keflex). It surprised me too as doctors always told me my nose problem was...
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    Hey - recently went somewhere that did use...

    Hey - recently went somewhere that did use forehead therm scan. I was fine. I was wearing a face mask and it was in the 90's. Granted, I'm doing much better with heat generally due to some...
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    That's great to hear! Really thrilled for you. ...

    That's great to hear! Really thrilled for you.

    The plaquenil never really helped my face - mostly my neck. So that's really interesting it's helping you and some other people who have similar...
  9. I agree, post-flood flushing sounds...

    I agree, post-flood flushing sounds inflammation-driven.

    There was a recent case study of low dose naltrexone helping a case of erythromelalgia (painful flushing on feet). The theory was that it...
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    My forehead therm readings do say "fever" even...

    My forehead therm readings do say "fever" even when I am not actively flushed. Maybe ~100? When I go to doc appts now though I have never gotten a temp reading, just a couple questions about travel...
  11. for me daytime constriction makes the night...

    for me daytime constriction makes the night flaring worse. Eg, the night flaring can be controlled, and then if I try to take nadolol (beta blocker, peripherally vasoconstrictive) the night flaring...
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    That's interesting distinction - I haven't used...

    That's interesting distinction - I haven't used Mirvaso but there were a couple things I've tried that I describe to doctors as "contributing to long term worsening of my condition". For example...
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    plaquenil article 2020

    https://www.sciencedirect.com/science/article/pii/S1567576919327614

    "Hydroxychloroquine is a novel therapeutic approach for rosacea"

    "In these diseases, HCQ acts as an immune modulator via...
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    I think neurogenic rosacea is just another term...

    I think neurogenic rosacea is just another term for flushing with strong sensations like stinging, burning, itching. Eythromelalgia on the face - to me, anyway - seems to be a subtype of neurogenic...
  15. Interesting, a doc suggested a JAK/STAT inhibitor...

    Interesting, a doc suggested a JAK/STAT inhibitor (tofacitinib) for me. It might be a little different from the ones mentioned though (not sure) and he has not used it in other patients like me....
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    Thought this review article on rosacea was...

    Thought this review article on rosacea was illuminating.

    https://pdfs.semanticscholar.org/4718/ebcd2834a10dd16de29012a02f3129a9a92f.pdf?_ga=2.246992391.2069536935.1586374636-117196160.1586374636...
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    Thank you for the example :)

    Thank you for the example :)
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    Hi V - I always wondered what you ate if you...

    Hi V -

    I always wondered what you ate if you didn't eat much meat on paleo? Do you mean that you don't eat red meat, but still eat chicken and fish, for example?

    Thanks + glad you are still...
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    Yes I agree about the nose being different....

    Yes I agree about the nose being different. Topical amitriptyline 6-10% (I recently added diazepam 2% and baclofen 5%, but it's the amit. that's doing the heavy lifting..) is great for my ears - so I...
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    nose flaring

    Just a quick post about nose flaring (swelling, flushing, and for me it burns on the inside of my nose).

    Things that help me:

    -oral metronidazole (about 3 wks in on 250 mg x2 dose, 80%...
  21. My skin itself is fine / a non-issue; I tolerated...

    My skin itself is fine / a non-issue; I tolerated the cream fine
    Yes, flushing / burning threshold was raised in terms of external heat (not social flaring, or night flaring - which were worse)....
  22. It took ~2 weeks to return to baseline after a 2...

    It took ~2 weeks to return to baseline after a 2 week use, but I feel I was lucky in that regard. I want to stress that I only did this with derm guidance. I also did it while also on mexiletine,...
  23. I want to say my experience here. I deal with...

    I want to say my experience here. I deal with flushing/burning esp. in evening. I put on 0.025% capsaicin topical on one side of face for 2 weeks, 2x / day. And then a later trial of 5x/day for 2...
  24. one important thing to keep in mind is that the...

    one important thing to keep in mind is that the good effects (if you have them) of laser/IPL will be temporary, and you'll have to regularly get treatments as long as you want to maintain the...
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    I take both. If I go down on either the...

    I take both.

    If I go down on either the flushing increases significantly and returns on my arms, torso, etc.

    I haven't noticed hair loss side effect personally.
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